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he made it look so easy taking me to all my appointments, taking me to all the professionals, without missing a heartbeat. he has been my driver. driving me towards being easy on myself. driving me towards relaxation. calmness. serenity. tranquility. he has been my saviour.

#poetry #personal #birth trauma #my support system #saved in my drafts for months

me 🤝 @nyttvera

that’s it. we are just holding hands

#hellooo ily 😭❣️💌🌙🍓✨💘🌱🍯#my support system

this is what it’s like to be my friend while i try to write things

me: They're so dumb

me: So in the MEHEM ending, do the relays break at all?

me: Or is it just the reapers?

@swaps55: I think just the reapers.

me: excellent

me: Okay so I just watched the MEHEM ending and the relays do get damaged, which I feel like, without the reapers to fix them, basically means they're fucked?

me: How is this a happy ending? who's gonna fix the relays??

me: Hi, I'm trying to write a short one shot and I'm already bogged down in fucking lore.

me: I hate me

@swaps55: HAHAHAHA

me: IT'S REALLY IMPORTANT OKAY

me: (Narrator: it was not important at all.)

@swaps55: *that sideways laughing face that i can’t copy and paste on my laptop*

#and that's on writing #swaps55 #my support system #and my #vortex of cool

I’ve been so busy with university that I’ve barely had time to use tumblr this year, and that’s made me realize why I came back to tumblr last year, and why it was so important to me. Around the time I came back, I had just come to the definitive conclusion that I was asexual after what was probably about 7 years of questioning my sexuality. And I had no one to share that with. Tumblr was my outlet when I felt like I couldn’t be fully myself around my real friends. I was able to build a community around myself full of people who supported me, who loved the same things as me, all while being able to be out and proud in a safe space, without the stress of people having preconceived ideas of who I was. But at uni, I’m out. I’ve got a pin on my bag and a flag in my room and all my friends know who I am. While I still love this space, and it’s still incredibly important to me, I don’t need it in the same way I used to. I have an irl support system that I didn’t just a few months ago. That also highlights the importance of tumblr as a platform overall. I was not the first person who needed this support system, and I won’t be the last. It is formatted in a way other social media platforms are not, that is much more conducive to creating a safe space for those who aren’t ready to be out, who can’t be out, or who still lack a support system while out. And that is just from the perspective of being queer. There are so many other people who need support for different reasons, and tumblr provides a space for that. While I wish I could be on here more, and I certainly will return to my previous habits on breaks, I’m not suffering for being gone like I would be 3 months ago. In the meantime, I miss y’all, and I will see y’all soon!

TLDR;Tumblr was my emotional support system when I needed it last year, and even though I need it less now, it’s why I will always love this blue hellsite.

#i love this blue hellsite #ace #asexual #community #my support system #i love all my followers #y'all are great #i miss you guys

Blog #10:Relationships with Pain

Let’s talk about relationships real quick. Chronic illness can be isolating. It is so easy to feel alone in your battles, and in many ways we do have to make a lot of efforts and growth on our own. There are many ways in which chronic illness can make relationships so much harder than they would be without it factored in, but that doesn’t mean it’s not worth it to build relationships and trust others. We don’t have to feel alone in our battles, and we do have several places that we can reach out to for support. No one can make the illness go away, and it is our job to make sure we find healthy ways to cope with our problems-- be it mental or physical health related. I started my journey with chronic pain feeling extremely alone. The doctors couldn’t tell me what was wrong, every sign pointed to “you’re healthy, there are no issues,” and it really felt like people were telling me it was all in my head. I wanted to talk about it, but I struggled to articulate why it was hard to get up and do the things I needed to do, why I was late all of the time, and why I didn’t know how to adjust to it yet. The labels lazy and irresponsible were starting to cling to me even though I still had an extremely strong work ethic. I just also had a severe amount of fatigue pulling me back. I was carrying around a heavy weight that continued to grow, and I did not know what to do with it, and it was taking an emotional toll. I also fed into the myth that sharing my issues and frustrations with pain would be a burden for others, so it was better left alone, which is entirely false. There are ways to communicate your frustrations that are healthy for both parties. And truthfully, part of being a good friend means being there for them. There’s nothing wrong with asking for help or asking if someone has the time to listen, especially if you’re willing to reciprocate that and show them the same kind of support whenever they need it. Knowing your resources and knowing your support systems are so important in being able to continue to stay healthy and continue throughout your day-to-day lifestyle. I have several support systems now, but they wren’t always around in the beginning or in the ways that I needed. And I didn’t always know how to communicate how I was feeling either, which gave me more trouble with getting help or even just helping those close to me understand what exactly it was that had been going on. (It definitely didn’t help that my doctors couldn’t easily explain it to me either, so you can see why this in general was just a big mess for a while on my end.) And “support system” doesn’t have to exclusively mean people who understand or who can offer helpful advice or solid solutions. It definitely factors in sometimes, but a good support system can be found in someone who is just there to hang out, keep you company, and remind you to have fun. So here’s a general list of people who have helped and supported me in ways I didn’t fully expect going into this. Family:

Family can be an incredibly helpful resource if you’re lucky enough to have that. And honestly, for the past 3 years, family is one of the support systems that has simultaneously been the most gratifying but also one of the ones that I struggled the most with, all the way out to my extended family. I’ve had family members tell me I’m faking it or exaggerating, that I’m not trying hard enough, that my fatigue and sheer exhaustion was just laziness, telling me that everyone experiences some aches and pains sometimes and to suck it up, and it was honestly just wearing me down. I had to learn to let go of those opinions. That if this is how anyone felt about me, even if they were family, they were wrong, and it was their problem if they didn’t want to accept my limits and let me accommodate for my own health. I knew my work ethic, i knew I wasn’t lazy, and I knew no one else had the same problems that I did at my age. I cared the most about my immediate family though. Truthfully, my dad didn’t want there to be anything wrong with me, and I looked healthy, so he struggled to accept that I am in debilitating pain often, and that I need to accept my limits, be honest about them, and pace myself, instead of just blindly pushing through these barriers like how he’s apt to do. But he’s also been there to make sure I have access to doctors appointments and the general healthcare that’s been helpful in trying to find solutions to this issue, and over time he’s gotten better about listening and accepting some of the harder stuff that comes with it. (Partially thanks to my mom.) My mom has been the BIGGEST support. She’s didn’t fully understand the problem at first either, for similar reasons to my dad: I’m young and I appear healthy, and I’m her baby, so she didn’t want anything to be wrong. But she was able to begin to accept it so much quicker because she experiences a lot of the same things that I do, but for different reasons. She’s been my advocate for so long and has helped me research issues, look for doctors, and find solutions. She’s honestly just been a great and understanding companion as well. Her issues stem from osteoarthritis, but we carry pain in similar areas. Mine are just more nerve related, and honestly, it’s nice to have someone who on any scale just kind of gets it. We’re able to in a sense compare notes, talk about what helps, what doesn’t help for both of us, and take turns helping each other out on bad pain days.

Friends:

There’s that old saying: you can’t choose your family, but you can choose your friends. And I have made many friends in my adult life who have been great, positive influences in not only how I deal with chronic illness, but also in how I treat myself. I have definitely made some draining and un-supportive “friends” along the way and have had to learn how to distance myself from them, but over time, even those friendships became learning experiences. I knew what not to look for in friends and the people who I surround myself with daily. But my best friends are the people I learn from and grow with daily and are honestly who I am most thankful for. My best friends from high school were the first to accept my health issues without pushing back. They were the first to really listen, and even if they didn’t understand, just hearing “I’m sorry dude. But these are your strengths and you’ve got this,” was so helpful. I think a majority of my friends either struggle with mental health or some form of chronic illness. Two of my more recent close friends struggle with chronic pain, one with migraines who is just as affected by weather as I am, and one who is in a similar boat with weird fluctuating symptoms, and more than a year’s worth of doctors appointments that lead to “normal” test results. And again, it is so nice to have people around and compare notes with what helps and what doesn’t help. And, I suppose sometimes misery loves company, but truthfully I think we all have used our problems as an outlet to learn the kind of patience and understanding it takes to help us all be aware of each others strengths and limitations and where we need to encourage one another or meet in the middle.

The same is true for my boyfriend. He’s been one of my best friends for the past seven years and he’s been a major help and support for me to learn how to accommodate for and manage my pain. He’s been there through all the frustration, tears, and just sheer agitation, and has met it with a tremendous amount of acceptance, patience, and understanding. Like genuinely, I am so lucky to have anyone who would even remotely be willing to offer that. I honestly never advocate for people who are struggling to seek out a significant other, because there’s a HUGE misconception that having a S/O will solve your problems. It doesn’t. But having someone in your life who knows you well, knows your strengths, and knows what you’ve been through is extremely comforting. At least in this situation, I’m including Matt as one of my supportive best friends, because, especially in regards to my health, I care way more about the friend aspect of our relationship.

Pets:

Okay I know this sound silly, but having a pet has been one of the most helpful things in regards to dealing with my pain. I learn from my rabbit every day. She makes me step outside of myself. Taking care of her and having her company is just so therapeutic. It can be inconvenient at times. Like, cleaning out her litter box can be an sever struggle when I’m flaring up pretty bad, same with refilling her hay box and doing any kind of bigger work, but it’s not anything that’s not worth sacrificing for her, and I can usually manage. She doesn’t offer any advice for my health issues, and she can’t technically listen to or understand my problems, but sometimes we don’t need complex solutions or understanding to feel better. Sometimes we just need company.

Online Communities:

If you don’t have anyone else, online communities can be a HUGE help in connecting with others. Especially others like yourself. One of the biggest helpful tools I’ve stumbled across is a Facebook Group. It’s is a smaller group of people all over the globe who each deal with various chronic illnesses who also love fashion and self-expression. It’s an open forum to ask questions, to make self expression posts, to vent, to encourage each other, and to get help with some of the harder issues, because chances are, someone in the group has had a similar struggle. I recently had to ask about barometric pressure changes and if the affect anyone else, and how to deal with the weather as it comes, because it’s something I personally still struggle with, and some of the solutions and affirmations that came from asking truly helped.

(Name and profile pic is blocked out for the privacy of the user.) Yourself:

You are your biggest support system. If all else fails, and trust me, I’ve been there, you have to learn how to rely on yourself. If all we do is tear ourselves down, we have no way of helping ourselves back up. We need to make sure that daily we are making a point to build ourself up long-term so that we have a good foundation for our more difficult days. We need to make sure that we are putting in the work, time, and effort to take care of ourselves, understand ourselves, accept our problems and quirks, work on them as best as we can, and help ourselves every day. That way, when there are hard days, even when no one else is available, you have something within yourself to pull from to pick yourself back up. We can either be our own worst enemy or our best friend. That’s something that, regardless of any of these other relationships and resources, we are in control of and we can always improve on. Overall: Seek out relationships that are healthy. Engage within them as healthily as you can! But most importantly, seek out a good relationship with yourself. Support systems often feel like everything, so it’s important that we invest in them whenever we can! Seeking out support systems is one of the many ways we can encourage ourselves to stay resilient!

#chronic illness #chronic pain #chronic fatigue #fibroymalgia #support systems #my support system #stay resilient #the art of being resilient #lifestyle blog

today i spent all day in the kitchen and made soooo much food. it was tiring and long and at times i wanted to just take a nap but then i drove around during a beautiful sunset to deliver dinner to all my friends and every minute i spent making those meals was suddenly so worth it!!!!

#i love my friends #community #local community #my support system #my loves #how lucky am i #to have so many mouths to feed #oh im grateful #so so lucky #i am so lucky

The other day was our 11 year anniversary! Let me just say that I can't even describe how thankful I am for this man and how he is constantly dealing with my daily ups and downs. He is always there for me, supporting and helping me in every way especially when I need the help the most (when I'm in extreme pain). I never have to ask for his support or help .. he just knows when I need it.